The past month has been a bit challenging. About a month ago, I started itching beyond just the ordinary dry winter skin. In fact, my skin was so hydrated from all the lotions that I started wondering if I was allergic to the lotions. But then again, this was one of the worst, ongoing winters on record, so that had to be it. I called my PCP doctor to see if they could prescribe something different — something prescription-strength — something effective.
Day One. Thursday. Now my PCP group is really a bunch of health care professionals who treat the flu, common cold and that sort of thing. When I go into their office, they give me a flu shot and send me on my way — they don’t like dealing with someone who has cancer — and certainly don’t reference it much. They give me the greenest nurse practitioner I ever met — she had to be 25. She was immediately convinced it was not dry skin, but definitely a food allergy — or maybe my thyroid — they would test for all that. They made me sign a bunch of forms — one for food allergy blood work that I agree to pay if my insurance didn’t pay for that. Then they gave me a Benadryl in the middle of the day just an hour before a client meeting. But I admit, that did help the itching a bit. Maybe I should have called my dermatologist. I don’t feel so confident with my PCP.
Day Four. Monday. I called my PCP in the afternoon, because the itching was overwhelming and I was so tired. My blood work was in, but the woman who answered the phone couldn’t tell me anything, because all the doctors were all in a meeting. I asked if I could get the results before they left for the day, and the unfriendly girl on the other end of the phone informed that they wouldn’t have time. They would call me in the morning.
Day Five. Tuesday. I still didn’t know what was up with my blood work, but had my most excellent doctor’s appointment with Dr. Goodman. I didn’t tell him about my itchy skin, because I was convinced that it was an allergy or my thyroid. What else could it be, right? But I was the one itching and getting annoyed that I hadn’t yet heard from my PCP. So I called at noon and got a different woman on the phone. This one was even more unpleasant than the one I had the night before. She said that the doctor had not read it yet. I asked if she was going to read it today and get back to me. And the girl said, “hooooppppeeefulllllyyyy.” In an extremely blasé fashion. I asked, “Hopefully? What does that mean? That’s a ridiculous thing to say.” She told me they would call me and hung up. I was mad now.
Someone called me back at 3:45 to tell me that I was anemic, and started barking all these additional tests at me (like a CT Scan that I just had the week before). I was like, “slow down, what does anemic mean?” I could practically hear the woman’s eyes rolling on the other end and said, “I’m just the messenger.” I started telling her I just had a CT Scan done. I could tell she thought I was being difficult. I just wanted an answer. So I asked to talk to the doctor, and she told me, “no, we don’t allow patients to talk to our doctors over the phone.” I replied, “that’s the most ridiculous thing I ever heard — my oncologists call me at home on the weekends!” Well, turns out, it was now the end of her day at 4 pm, so this issue would need resolved tomorrow. Another day gone.
Day Six. Wednesday. No calls, so at 10 am, I call their office and I get Barb. Now, Barb is the nicest one in that office. She tells me that my nurse practitioner has the day off today. Okay, are you kidding me? She would ask the doctor if she would look at my blood work and get back to me. This is unbelievable and quite ridiculous at this point. I ask Barb if I can talk to the doctor and she tells me they won’t do a consultation over the phone. Are you kidding me? Okay, I take a deep breath and tell her I’ll wait for my next steps. Which come at 3:45. This time Barb informs me that they won’t treat me. Nope, they want to defer me to my oncologist since he watches and monitors me. This is likely related to that. Okay, now I’m mad. I’ve lost almost a full week. I’m still itchy and reading anemic symptoms online — I have all of them. I’ve probably been anemic for some time. I feel despair.
Day Seven. Thursday. A full week gone by, and I’m cursing my PCP. I call Dr. Goodman’s office. They tell me that they can’t treat it, because the don’t handle blood work. If my PCP won’t treat it, then I need to consider a hematologist. So I call my PCP to tell them that Dr. Goodman can’t treat the anemia that I don’t understand why they can’t just treat it. She tells me to find a hematologist. Are you kidding me? What good is a PCP who doesn’t ever actually treat you for anything? I’m outright mad now. I have friends telling me it’s Obamacare, others agreeing with me — but at the end of the day — I just have a complete idiotic and incompetent PCP practice. So day seven, I take control back. I find a new PCP and hematologist all in the same day.
Day Eight. Friday. The new hematologist tells me they have to gather all my records. Haha, I tell them they could have a fun time with that. It’s a Friday night and they fax me a form that basically permits my doctors to release my records to them. I fill it out and email it back within 10 minutes. I shut down my computer and go home defeated.
And then into the black abyss. Almost another week goes by. I call the hematologist and they’re still gathering my records. And once they have that in hand, they will call to schedule an appointment. Okay, now I just don’t care anymore. I start reading how I can maybe treat myself. Tom is giving me B-vitamins. I’m tired and so itchy I could just die. But nobody cares. I lay in bed at night and determine the itching is worse than the chemo sickness I had all those years ago. I could crawl out of my skin.
Ah, finally — the hematologist calls for an appointment. The earliest I can get is a week away and the night before I leave for New Orleans. I take it.
In the meantime, I have a follow up appointment with my other oncologist. He tells me how great I look and blah, blah, blah, and I tell him I’m so itchy I could scratch off my skin. And then I show him what I’ve done to myself. I tell him I’m anemic, but going on three weeks and still no treatment. Nobody is in any hurry to get me fixed — and I am secretly wishing all the women at my old PCP practice would get the kind of itching skin I have. He gets it right away and sends me to a specialist — who can give me an iron infusion. He tells me to cancel my hematologist and he’ll work on expediting this treatment for me.
I’m writing this post on the plane ride to New Orleans. I’m still itching. My travel companion is so understanding. I am totally exhausted now, and I feel like it’s worse because I know how low my blood work numbers are. I seen the specialist before I left. He’s a internal medicine doctor and totally understands everything I’ve been through. He tells me to take it easy when I travel, and they’ll get me for an iron infusion as soon as I’m back — and that many doctors don’t realize that the point my blood work numbers were at is where symptoms really start to present themselves — itchy skin being one of them.
I get back at 1:30 am on Friday morning — super late — and it looks like I’ll get the iron infusion later that day. I have to be at AGH at 9 am.
That’s how healthcare should be handled. I feel like I was the chess piece in some elaborate game of pass the buck. Healthcare professionals need to learn how to listen, because the patient is giving you all the clues to what’s going on in their bodies. But they immediately make a diagnosis based on nothing factual whatsoever. Specialists and oncologists understand the issue of urgency. This needs to roll down to the least common denominator — a group of healthcare professional who probably hate their jobs and are angry at the world. And it makes me think about that, because the women at my old PCP practice are the most miserable women I have to deal with.
Your staff is only going to be as good as the people who run the place. There are two doctors whose names are on the door — they should be embarrassed at their staff, mortified at the way patients are treated and looking for ways to improve. I’ve had this PCP since 2009 and it’s been this way since I walked through the door. And when I was researching the hematologists they referred me to on healthtracks.com, they were rated a 3 out of 5 by their patients. And when I looked up my PCP, they were also rated a 3, with many scores at 2 and 1. I chose a completely different doctor, based on a score of 5. There should be no mediocre doctors.
I have to remember that I’m ultimately the one in charge of my health. Finding good and responsive doctors is up to me. My first oncologist, Dr. Price — a most amazing doctor who believed in me — always told me to seek a second opinion. We did that often and have come across all kinds of doctors out there. But those opinions helped us make informed choices or reinforced the recommendations at hand. I remember my brother Bob telling me that when parishioners came to him about a recent diagnosis, he would tell them about me — always seeking a second opinion. Never accepting the first answer or at least validating it — always believing.
So how about that iron infusion? Well, okay, it took like 12 hours. But it was a very relaxing day in a very comfortable room with super nice nurses. I half expected results the next day. It took about a week — I felt like I had the flu and could barely make it through the work day. Whatever was going on in my body was intense. But this weekend — I woke up with a new lease on life. It’s working. If you’re ever told you need an iron infusion — don’t hesitate. I’m back!!!!
Always B E L I E V E.